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Hi @whoami! I'm sorry you are going through this - it is really awful. The first thing I will tell you is - DON'T PANIC. In my case, this was gastroparesis and I'm sure any anxiety I was feeling wasn't helping. It happened to me two distinct times last year when I was still being worked up by different specialists and not yet officially diagnosed with POTS or on any meds. It turned around on its own both times. Both times, I lost ten lbs. in two weeks. I'm not overweight so it was scary but, honestly, I think it's scary no matter what someone's weight situation is. Anyway, here's what helped me - I drank broth, Pedialyte, Gatorade, Ensure, Carnation Breakfast drinks (in a bottle, kind of like Ensure), milk, and of course water. I had just baby-small portions of actual food - I literally bought jars of baby food and ate what I could so I would at least have some balance in what I ate - meat, veggies, etc. I could only take a couple of bites and I would feel full. I also ate what soup and broth I could. Don't ask me why, but I had a very frequent craving for chicken soup when my symptoms were intense and I wasn't yet diagnosed. If there is *any* kind of food you really like, that is easy for you to eat, now's the time to eat that, even if you can only take a couple of bites. The second time it happened, I went to a GI specialist . . . he said it sounded like gastroparesis and when I told him I was scheduled to be tested for POTS (TTT), he said it could very well be POTS-related, so go do the test, if it's POTS get treated, and if that didn't help or if it turned out to not be POTS, to come back and see him. I remember he told me I should be getting 1700 calories a day and I was, like, I can barely do 500. It hasn't happened (knock wood!!) since I've been diagnosed and placed on a low dose of a beta blocker. Have you been diagnosed with anything yet - are you taking any meds? As I said, try not to panic because that will only make you feel worse and further decrease your appetite. I know that is easier said than done . . . I know how scary it can be when your symptoms are out of control. If at all possible, try to get seen by someone familiar with autonomic dysfunction, even if you have to pay out-of-pocket . . . having someone "on your case" will do wonders for your peace of mind, even if you don't get all the answers at once. And I am sure you will also get much helpful advice from others here. Sending positive thoughts and good vibes your way!!

160-something that I've seen; I don't remember that last digit. I was home alone, midday; my husband was at work. I had eaten a light lunch shortly before and I started to feel light-headed and then noticed my heart beating faster. I put on the Pulse-Ox thing and watched it quickly go up into the 160s. It reminded me of a speedometer when you hit the gas. I hadn't seen it that high before; I was home alone and that and the light-headedness freaked me out, so I called 9-1-1 and explained what was happening . . . as I was talking, I still had the Pulse-Ox thing on, and it was going lower and lower, back to normal, so I told the operator I thought I was OK now and not to send anyone. He was very nice, telling me to call back if I felt like I needed to. This was a little more than a year ago, when I was still being worked up by various specialists trying to find out what was going on. When I finally got to the neuro a couple of months later (referred by endo), he thought I probably had POTS but referred me for the tilt table test to be sure.

@WinterSown She likes bee butts and she cannot lie!!

@bombsh3ll This is so true - I learned it the hard way many years ago when I had some kind of stomach bug and I was ready to be sick. I tried to hold it back - mistake! - my body had other ideas and I woke up on the floor, the deed having been done. My body knew there was something that needed to take its leave of me, and obviously did not appreciate me being a hindrance!

Hi, @gertie! Sorry you are dealing with these weird sensations . . . what you describe - "an electric shock that radiates down from your hip to your leg" - sounds like the way my husband describes it when he has a particularly nasty sciatica attack. I have had what I *think* might be RLS a few times, but I'm not sure if that's what it is. I would describe it as a "teeming" feeling in my leg (last couple of times I felt it, it was in one leg) . . . as if my leg has all kinds of liveliness teeming inside, and I feel as if I need to move or shake it. And yeh, it is when I first lay down to go to sleep. It has not happened often, knock wood. This probably sounds ridiculous, but the way I have dealt with it is to try to ignore it! I know, right? Easier said than done. But I start to think of other things to distract and keep my mind occupied - not worrisome things to keep me awake, but mundane things that make me sleepy, such as making a grocery list in my head, etc., and before too long I fall asleep. If I feel it again, it will be too soon!! I hope you are able to find relief soon, because what you describe does sound annoying!

Hi, @bombsh3ll and @Conrad_hemsley! Thanks for your comments and words of caution - they are very much appreciated! To all, definitely discuss with your POTS/dysautonomia specialist any new actions you may be considering regarding your treatment/wellness before trying them. I suspect mine is probably tired of my emails; I practically ask him if it's okay if I sneeze before I do 😄 @bombsh3ll, that story is ghastly and enough to make anyone with POTS/dys not want to step foot on a plane! Do you know if this happened any time recently? @Conrad_hemsley , I have actually not only had the door open, but had my husband stand nearby outside, just in case . . . !! Best to you both and I hope you are having a good day!

Hi, @Conrad_hemsley! I hope you are feeling good today! I'm going to offer my two cents about the bed issue, although I think my experience may be very different from a lot of others'. Last year, when my symptoms appeared and I began learning about POTS, I repeatedly encountered the advice about raising the head of my bed (we actually have an electrically adjustable bed). When I tried this, my brain fog and dizziness were worse when I woke up. As I learned more about POTS and that the brain fog/dizziness can result from inadequate blood flow to the brain, I tried laying down when I was dizzy/brain foggy during the day with the *end* (foot) of the bed raised, and that helped me noticeably and didn't seem to worsen any of my many other symptoms. I now always sleep with the *foot* of the bed elevated, and I suspect this helps move blood to my brain via sheer gravity. My guess is that when I slept with the bed/my head elevated, it made it even more difficult than it already was for blood to reach my brain. If there is anyone here who was not helped (or in my case made worse) by sleeping with the head of the bed raised, try raising the foot of your bed instead. For those of you who are helped by sleeping with the head of your bed raised, feel free to disregard this post!

@WinterSown, great vid - thanks for the smiles!! A few days ago, I missed what would have been two awesome photo ops if I had managed to whip out my phone soon enough. The first was - and I am not kidding - a squirrel sitting on top of the head of the St. Francis of Assisi statue we have in our front yard! I saw him from the house through the garage door window - I ran to get my phone which took maybe 10-15 seconds, but he was gone by the time I returned. Later that day, a small black snake was on the brick stoop on the side of our house; I saw him from the door window. Had my phone in my pocket, and no sooner did I twitch my arm to get the phone, than he slithered off!

@Derek1987 I had to look this med up, as I'd never heard of it . . . below is precaution info from a site called "PDR - Prescriber's Digital Reference". I *believe* it's the on-line version to the hard-copy "Physician's Desk Reference", so it's reputable if that's the case. Check out the second paragraph, where it says that the subcutaneous version should be used with caution in patients at risk for syncope. I'm guessing what you were prescribed is not the subcutaneous version, but I'd still be careful and call your doc and ask her why she prescribed it and how she believes it will work. Don't be afraid or embarrassed to question your doctor about this. It's your body and your peace of mind, and any decent doctor should get that. Edited to add: Not sure how you normally communicate with your doc but, if you're on a "patient portal" with your doc's office, a lot of them have a function where you can email your doc from there. @Pistol - I would be interested to know the doc's logic behind the script, and this is a really good thought. CONTRAINDICATIONS / PRECAUTIONS Bladder obstruction, GI obstruction, ileus, inflammatory bowel disease, peptic ulcer disease, peritonitis, surgery, urinary tract obstruction Bethanechol use is contraindicated when the strength or integrity of the gastrointestinal or bladder wall is questionable. Increased muscular activity of the GI tract or bladder may prove harmful, worsening the underlying condition and risking rupture or perforation. Conditions that contraindicate bethanechol use include: GI obstruction (ileus) and bladder obstruction or urinary tract obstruction. Bethanechol is contraindicated in patients with inflammatory bowel disease, peritonitis, marked vagotonia, or who have undergone recent gastrointestinal or bladder surgery. Increased stimulation of gastric acid also contraindicates bethanechol use in peptic ulcer disease. Bradycardia, coronary artery disease, driving or operating machinery, hypertension, hypotension, intramuscular injections, intravenous administration, orthostatic hypotension, syncope Bethanechol use is contraindicated in patients with pronounced bradycardia, pronounced hypotension, or coronary artery disease. Bethanechol can cause orthostatic hypotension, specifically after subcutaneous administration, and should be used with caution in patients at risk for syncope. Bethanechol should never be given by intramuscular injections or intravenous administration. Administration by either of these routes can precipitate cholinergic over-stimulation, causing circulatory collapse, sudden hypotension, abdominal cramps, bloody diarrhea, shock, or sudden cardiac arrest. A more precipitous drop in blood pressure can be seen in patients with hypertension. Administration by the oral or subcutaneous route can have a mild negative chronotropic effect. Due to potential for orthostatic hypotension, patients may be warned to avoid driving or operating machinery until the effects of bethanechol are known.

@Bwig Hello, I am glad your beta blocker has been helping but sorry to hear about the breathing thing - have you asked your doc about it? In researching beta blockers (thanks to POTS, I know more about them than I ever wanted to . . . ), I have read that shortness of breath can be one of the less-common side effects of them. If that were the case with you, maybe your dr. could have you try a lower dose, if you're not already taking a low dose. Something interesting that happened with me: When my symptoms came on last year, I noticed that, in spite of all the frightening symptoms I was having, whenever I took a conscious, deep breath, it was almost always deep and "satisfying", as you called it (good word!) This was very odd to me because my deep breaths didn't feel that satisfying *before* I had POTS, and I would not have expected them to feel that way now that something was obviously wrong. But what I found out is that when your body goes into "fight or flight" mode, adrenaline, etc., as mine was, your lungs open up to prepare you for the potential "flight". This explained what was happening with me. When I started my beta blocker, my breathing felt pretty much back to what it was before. If you haven't done this already, I recommend consulting with your dr. or even your pharmacist (I've had at least one doctor tell me that pharmacists know more about side effects than they do . . . !) to see if your shortness of breath feeling might be a possible side effect and if a lower dose of your BB might help. It may or may not be what's going on but, if it's not, you can at least rule that out. Good luck and I hope you feel better soon! Edited to add: Don't change anything up without first discussing with your POTS doc/whoever prescribed the BB. Best!!

@Heart4paws Hello! Sorry to hear your symptoms are flaring up, especially after what sounds like successful treatment for quite a few years! I don't take Metoprolol, but a friend has taken it for years due to unexplained tachycardia, and has had good results. Do you have other POTS symptoms besides the cardiac ones? I ask because Metoprolol is what's known as a "selective" beta blocker, meaning it works mainly on your cardiac system, but there are other BBs that are "non-selective" that work on the rest of your autonomic nervous system, such as blood vessels, GI tract, etc. The one I'm taking - Propranolol - is non-selective, but I had such a laundry list of symptoms. If your main symptom is your heart rate, it sounds as if the metoprolol is a good thing to try. If you're having a lot of other ANS symptoms, you may want to see what your dr. thinks about trying a non-selective beta blocker. If you're nervous about trying a new med, you could ask the dr. if you could start on the lowest dose and see what happens. Don't get discouraged if you try something new and don't get the results you hope for, because there are a lot of different meds to try and sometimes it's just a matter of finding the right med or combination of meds. Good luck and I hope your symptoms take their leave of you soon!!

Oh, I love that your dog is also a Poodle and, yes, a total joy!! I've had shivering a couple of times with this and I have two theories - first is that sometimes I go from being really warm to really cold, and have shivered when I felt too cold. I'm not sure if that is POTS-related or hot flashes, because I did start getting hot flashes when I was 50. Whether or not it's menopausal hot flashes, I suspect it may be related to whatever causes the heat intolerance. The other possibility is that the shivers come from over-stimulation of the autonomic nervous system - adrenaline. This happened to me a couple of times before I was diagnosed and taking any meds (I also take a beta blocker as prescribed by my POTS doc), and you don't have to be anxious for it to happen. I remember my husband saying to me, "You're shaking like a leaf!" You bring up a good point about the possibility of your beta blocker masking symptoms. I keep mine on a table by the bed with water (that way it's less likely that I will forget to take it, ha ha!) and take it an hour or two before I actually get out of bed and start my day and that way it's well "on board" before I start agitating my autonomic nervous system! I could go on and on! Feel free to message me if you'd ever like to discuss at greater length, or for support. Good health to you - and your Poodle!!

Hi, Paula! Sorry to hear about your symptoms . . . some of them do sound very POTS-like. I was diagnosed with POTS last year at age 56, after a sudden four-month barrage of many bizarre and frightening autonomic symptoms. Like you, my heart rate would increase after I ate - the highest I ever clocked it at was 160-something very shortly after eating (I used one of those pulse-ox things you put on your finger tip). I would get tachycardic just walking calmly through the house and the neuro who diagnosed me said I was tachycardic during my exam, just sitting there. I, too, began getting fuzzy-headed and light-headed when standing - that is actually a pretty classic POTS symptom. As you point out, it could be caused by other things, but you won't know if you don't investigate. Also like you, I had some symptoms for a few years leading up to the four-month-long "attack". I had lost my tolerance to heat - this is someone who thought nothing of sweating out in the summer sun, mowing the lawn, participating in some type of sports activity, etc. But it got to where I couldn't even take a walk outside on a hot, sunny day without feeling as if someone pulled the plug on my energy - I'd feel completely sapped and like I had to get to where it was cooler, and fast. I knew something was wrong, but I chalked it up to menopause because a couple of my friends who had been through it said their tolerance to heat decreased after menopause. But this was ridiculous. I also started having these weird "peeing episodes" - no UTIs involved - where I would pee over and over again, several times per hour, and then it would stop just as quickly as it started. I get the occasional upper body aches as well. Re: the dehydration, my POTS doc - a neuro - told me to stay well-hydrated because it helps keep your blood volume up, so that could explain why you become symptomatic when you are dehydrated. I didn't get the fatigue at first, but I get it now and when I do I hit the bed - you learn to "go with the flow" with this, because it's what I like to call "predictably unpredictable"! And yeh, my Toy Poodle loves to keep me company on those days! You mentioned fainting when you had bad menstrual cramps - I never fainted, but I had several episodes between about age 16 through 22 where I had awful cramps and became very lightheaded and sweaty and thought I was going to pass out, but I never did - the feeling would pass. I don't relate it to POTS. Before I went on the Pill, my periods were brutal. So anyway, you have nothing to lose by asking your cardiologist about it. Good luck and I hope you find out the cause of your symptoms! Sorry for the long post!

Found it; thanks for posting the item # or whatever number it is - I am definitely going to try this! It will beat looking for a magazine or something to fan myself when it gets too warm. I can't believe how tiny it looks in that person's hand!!

How about sitting in a warm exam room with the door closed and no windows while waiting for the doc? Not even any air movement; ugh! I have wicked heat intolerance as well so thanks for the tip. I can't believe I used to be able to be active for hours in the sun.

YES! May this be the first of many!! 👍👍

I get this from time to time . . . I don't think it's related to POTS per se but, since POTS affects blood circulation, I'm guessing that when you're sleeping in certain positions, the POTS may allow it to happen *easier* because your circulation is already compromised. Rest easy! 🌛

This sometimes happens to me when I have to sit still for a while and yes, I do believe it is from sitting still for too long. It happened last week when I sat for maybe a couple of hours straight, getting caught up on newspapers and mail. A couple of things have helped me with this - first, moving about in *whatever manner is possible at the moment* if I can't get up and start walking. The OP mentioned getting haircuts and sitting in a car but even sitting in a car isn't bad (unless I'm the driver and am at a standstill in traffic) because if I'm a passenger, I can still move my legs around and shift positions, move the seat back, and, if I'm the driver, I can still be in control if I need to pull over. Stuck in traffic and driving myself, no place to pull over, different story. Then I crank up the A/C full force and blow it on my face, no matter how cold it is outside, and take a swig or two of ice water I keep on hand in a tumbler. And take deep, slow breaths and try to distract my mind and not think about it, because that makes it worse. Sing to myself or something. I think one reason haircuts are tricky is that you're "expected" to sit still when someone's working on your hair so you might not be so comfortable to start "fidgeting". I was on jury duty yesterday and you know how that goes, sit, sit, sit . . . I started to feel a little bit woozy after a while so I started moving my legs back and forth as I sat, you know, bending them at the knees as if I were walking. Drank a bit of Carnation breakfast drink I had in my purse, as a distraction. It helped, but I was kind of wiped out by the time I got home a couple of hours later. DH wisely advised me to hit the bed!

I was diagnosed last year at age 56, so I guess that rules me out. A friend recently told me her Mom was diagnosed with it 20+ years ago in her 60s; she is now in her 80s and still taking the same beta blocker as when she was first diagnosed.

I had a couple of symptoms like that myself - ones I did not care to relate to any of the docs I saw! Mind you, I was describing quite a few symptoms to them, but a couple of them were just too weird to describe! Re: the Atenolol you're taking - my understanding is that it is a "selective" beta blocker, which means it mostly affects the heart. You mentioned that you've tried a lot of different meds - have you tried a "non-selective" beta blocker? Non-selective beta blockers affect not only your heart, but also blood vessels, lungs, GI system, etc. Basically all of the autonomic nervous system and not just the heart. The beta blocker I take is called Propranolol, and it's a non-selective one. I started with a dose even lower than the one the doc first recommended, after discussing with him, because I wanted to see how it would work and I'm leery of side effects; it's been ten months and so far I'm still on that dose. Another thing that I think has helped me - and I thank the person on here who gave me this advice sometime last year - is to take my BB *before* I get up and start my day. I've played around a little with how much time, and what seems to work the best is if I get it on board a couple of hours before I actually get up for the day. So if I'm getting up at 6:00 A.M. or thereabouts, I take it around 4:00 A.M. or as close to that as I can get - I don't set a clock or anything because I'm a light sleeper; I just look at the clock when I roll over in bed and if it's about that time, the pill and glass of water are waiting on the table beside the bed. Sorry if this is too long! Just wanted to share some of my own experience in case it might be helpful. It's hard to tell, because everyone is truly so different! GOOD LUCK, hang in there and I hope your symptoms subside soon!!

@Heartbroken Hi, HB! Sorry to hear you are dealing with this carp . . . I have experienced some of it so will try to hopefully shed some light on it. Before I was diagnosed and taking meds (four lovely months last year), I would sometimes get lightheaded after eating, and even tachycardic. My understanding is that this happens after eating especially a heavy meal, because more blood is rushing to your stomach to help it do its job and away from your brain=lightheadedness, and our blood flow is already compromised. I also noticed that sometimes my blood pressure would go down in those cases. In my case, sometimes when this happened it was the lead-in to a period of gastroparesis, during which I could only drink (I drank Ensure, Gatorade, Pedialyte and water) and eat teeny tiny bits of food (I was buying baby food so I could at least have balanced meals!). Two distinct episodes lasted about two weeks and I lost ten lbs. each time. Hopefully you will not have to deal with that. You mentioned "weird feeling in your gut" - I had so many different ones of those I don't know where to begin! I had morning nausea every morning, diarrhea, and even feelings as if my stomach were palpitating like my heart after I ate! Re: the craving sweets but having normal blood sugar - I had this too, also feeling jittery as if my blood sugar were low. I would check my blood sugar and it was always normal. This was a mystery to me, too, but I read an interesting theory somewhere (maybe on here?) where someone guessed that because of the poor blood flow to the brain and other places POTSies often have, the sugar in your blood isn't getting to those places, either, which could account for feeling jittery and "low". I don't know if that is true, but it makes sense to me! I still get this feeling sometimes, but not to the degree I did before. I hope this helps put your mind at ease and that your symptoms will improve soon - try not to be too obvious rolling your eyes when the doc says it's "anxiety". Are you on any meds for POTS specifically?

Hi Conrad! I'm sorry you're going through this and I hope things improve for you soon! I have a question - I also take propranolol, BTW - when or after you started your exercise routine, did you ask your POTS doc if it might be an idea to increase your dose of propranolol or make any other med changes? It sounds as if the dose you're taking now might not be able to keep up with the new level of activity you're now doing, especially since your heart rate is staying up. I'm thinking you're not over-exercising, but "under-dosing"! I have found that symptoms often pop up *the day after* I had an especially busy day with more activity than I usually do. I take a day or two to recoup. It might be that if you're going to continue the exercises (good for you, by the way!!), you may just need to up your dose. But talk with your doctor first. And yeh, it's probably a good idea to stay away from the Chinese food. I've noticed the last couple of times I had it that I felt really carppy the morning after, and it never used to bother me. Good luck and I hope you feel better soon!!

Mine started just over a year ago following a several-week period of some of the worst stress and worry of my life. However, I had symptoms a few years leading up to that that I think were related - heart palpitations (that I chalked up to menopause); this strange constant peeing that would come and go for no apparent reason; and this overpowering intolerance to heat, when being out in the sun/heat never used to bother me. At work, I would go out for walks at lunch time when it was hot out and after a few minutes, it was as if someone just pulled the plug on my energy and I had to get out of the heat. My POTS doc thinks I had it coming on for some time but was able to "fight it off" with my daily routine of working and walking. I had retired five months before my symptoms came full-on, and he thinks being retired plus the aforementioned stress and worry basically allowed the POTS to gain a foothold.

Livedo reticularis? (The lacy pattern). Edit: I actually had this happen to me maybe 20 or so years ago. I was out walking on a very hot day, wearing long jeans (which I usually don't wear in hot weather, but it was Casual Friday at work) and when I stopped at the girls' room after getting back from my lunchtime walk, my legs, at least above my knees, were, like, striped! I was only diagnosed with POTS this past summer after four months of bizarre symptoms, but this makes me wonder if it might be related, even after all that time. I now have very little tolerance to heat. So much unknown to this stuff.

My understanding is that the increase of 30 or more bpm should take place within those ten minutes, but they do not have to be sustained for the whole ten.